Welcome! This blog reflects more or less my description of living with Usher syndrome, my CI (cochlear implant) journey, my guide dog journey, and any random thoughts I may want to post.

Wednesday, January 31, 2007

The Two Way Street

It's funny how even though I am only hard-of-hearing and legally blind, I am labeled "deaf-blind." It does not mean that someone who wears glasses to correct his or her vision and has a very mild hearling loss is considered deaf-blind. Only if your hearing loss is severe or profound and that you are legally blind (besides the obvious-being totally deaf and blind), then you are considered deaf-blind.

A fellow deaf-blind person wrote this article. It is long, but I couldn't have written it better-with my own perspective, of course. It gives further elaboration to the deafness or blindness issue that I posted just before this one.

Which is worse, deafness or blindness? A tug-of-war question between the Deaf and Blind communities for years. I am sticking my neck out here somewhat but that has been definitely one of my bad habits.

The answer on this as far as I am concerned comes in two and I will be looking into the situation from the perspective of a Deaf and Blind person. Due to the unfortunate health problems, I now find myself as well part of the Deaf and Blind community. Verbal communication is one of the most important things for everyone, and how much smaller and sheltered the world becomes without that ability? Regardless of the visual problems even as a totally blind person, one is still capable of communicating verbally with the world around them as long as they have some hearing left. Also a totally deaf person experiencing severe limitations with vision, find themselves very much closed in a small community of other severely hearing affected people, communicating with such things as finger spelling and sign language. Unfortunately limited becomes their communicating world because of this and without much doubt in such a situation I would say deafness is much worse. Separately deafness or blindness, here is where the answer changes and I would say blindness is much worse. Let me explain here my reason for this. A totally deaf person with full vision is still capable of doing many things a blind person cannot for example driving a car, very essential in our modern society. Also with full vision the ability to read lips is there, so their communication level increases as they would be able to communicate with virtually everybody. Modern technology is making those benefits even greater with the introduction of the Cochlear Implant. On the other hand, a legally blind person but still with full hearing, finds themselves much more limited compared to the options available to a deaf person with full vision. The answers here include both disabilities and although it may look as if I am walking with a foot on either side, most people would be able to understand here the explanations I’ve given.

Thoughts of experiencing any major health afflictions, is something that leaves a person fairly horrified, for it would be difficult to associate with such major health problems. The magnitude of Deaf Blindness is definitely one of those severe experiences. The human ability to adjust in life with environmental or personal difficulties though is something we often take for granted, possibly because of that adjustment taking place after a while, as we continue walking along life's road. It is very true also that the older the person experiencing that health problem for the first time, the greater the adjustment difficulties. It becomes very much an internally concentrated issue with numerous unanswered questions for example, what is the reason behind me experiencing such a horrific health condition? What we tend to forget to consider when judging people's attitude and behaviour is when did that health problem occur? What I am expressing here is something that becomes a little difficult to understand without that personal experience. A person born with either one of those health afflictions or both wouldn't have had, unfortunately, the opportunity of fully experiencing them. In other words, you never miss what you’ve never had. When I first joined the Deaf Blind community, one of the surprises was the many smiling faces among totally deaf people. My immediate thought was "How can they smile when experiencing such severe health problems?" Although the answer may come across a little hard for some: "Out of hearing, out of mind". Here is a lesson we can all learn from. Reaction often in various ways takes place from hearing or visual observation. Attending the Blind School after losing most of my vision at a young age, I was surprised how fearless the many blind children who were born totally blind were. Here is an example. Every weekend the children remaining at the school for the blind were taken on various adventurous outings at the countryside. I often took advantage of this by staying in on the weekend. One particular weekend we were taken bushwalking, a favourite pastime very much enjoyed by many Australian citizens. This particular weekend was early in my introduction to this new lifestyle and I was quite unaware at the time of the permanence of it. Lost in the vastness of creation, we were made to walk through an extremely thick bush area along a cliff face with at least a 200 yards drop. This involved only holding on to bushes on the side of the cliff. Now, even Tarzan would have second thoughts of doing such a thing! For blind children though, unaware of the visual experience, fear never had a chance of setting foot. Here again another little quote to put to memory: “Out of vision, out of mind."

What a wonderful miraculous thing it would be for a person to receive their hearing or vision for the first time! In many ways I agree with that, it would be a truly wonderful experience, but???? I can see some of you saying, “Not again, what are the problems this time?” Don’t get me wrong, it’s a wonderful world we are all living in full of scenes and sounds we learn to adjust to from childhood days. The absence of all these things throughout life does create pressure and stress on a person. I am speaking here from some personal experience. However, for a person hearing and seeing all these things we classify as part of life for the very first time, what a shock it would be when used to living in a silent and imaginary world for many years. Something that comes to mind here from a popular song in the last century, ‘Silence is golden’. Here is a true story of such an event: A totally deaf person was successfully given a Cochlear Implant operation with the opportunity of hearing for the very first time. That person couldn’t handle the extremely noisy world he was experiencing so he took the Cochlear Implant hearing aid off and returned to his peaceful and silent world communicating with sign language like he had done for years. Prior to a person receiving vision for the first time, one tends to adjust to the world around them by using the sense of touch, which is the best alternative when lacking vision. Never being able to see before one tends to create their own mental images of what they are touching. There was a story of a lady in London receiving her vision for the very first time, here again for many of us what a wonderful thing but for them nothing but a nightmare. She explained in her book that at the start when receiving some vision for the first time that unless she touched such things as cups or plates on the table she had no idea what they were. She also expresses of her great surprise when looking out the back door and seeing a bird on a tree branch. Things we tend to take for granted but for them though every day is nothing but full of exploring and new experiences. Now here is the frightening part, never having vision before one would not be aware of the silent world around them. Walking along the street for the first time, would be the most fearful experience ever in their life, as trees, posts, houses etc. would look as if they are moving towards them with every step they take. Again, something we tend to take for granted after losing some vision and adjustment starts to take place as we walk along the street or inside our own house. For them however, it is nothing but a nightmare for a long time, while their system is slowly adjusting to their new way of life. Under such circumstances, beauty is not necessarily what it is for many of us.

Many more restrictions in various ways, do settle in a person’s life with the experience of disability. The more severe the disability, the greater the restrictions. Socialising is one of those problems and huge changes for that person do take place when confronted with something fairly dramatic at the time and often quite permanent. I will be expressing here something quite realistic, although I am sure some of the people without a disability, would speak strongly against it and show their personal concerns and support towards disabled friends. 'Superficial judgements' are something unfortunately we all tend to participate in, some more than others. A person doesn’t stop being part of humanity as a human being simply because of the disability whether sudden or from birth. That person very much still has those same needs as another living being and in reality greater are those needs because of that unfortunate health affliction. The emotional love factor is Universal and the restriction of this emotion does create many problems throughout life. When next confronted with a person experiencing a disability always remember they are just as human as you but travelling with a somewhat damaged vehicle in life. Be aware of your reaction towards the situation at the time and always keep in mind this famous little quote from the Bible: “Do unto others as you would have them do unto you". Emotionally there are not many other greater pleasures in life than the self-satisfaction and acknowledgement at the end of the day of having assisted in making life easier for another human being.

As Deaf Blindness is a combination of two severe disabilities, smaller is the number of people afflicted. Here in Australia there is a Deaf and Blind Association [DBA] in every state representing and assisting people with these disabilities. In many ways I am truly grateful for the opportunity of being in Melbourne at such a dramatic period in my life, to receive the Cochlear Implant and the ability to hear once again. The Deaf and Blind Association [DBA] here in the state of Victoria did also provided moral support for me during this difficult period, while the hearing was deteriorating fairly quickly. Although the representation of the various DBA organisations around Australia exists in every state, limited is that assistance due to the lack of financial support from the various state governments. The DBA here in Melbourne, to express it in this terminology, are head and shoulders above any other Deaf and Blind Association in this country. The reason for this is back in the 1960’s the parents of Deaf and Blind children here in Victoria got together and approached the state government for assistance. This was a positive step which saw the gradual development of the DBA becoming what it is today. For sure I could not have coped with all these problems without the tremendous assistance from the Eye and Ear Hospital and the DBA. Whenever we find ourselves with the opportunity of assisting another person, do see it for what it really is; not necessarily only providing important and necessary assistance for that particular moment in time. How true is the belief that nothing happens by accident.

About Me

Living with a genetic disorder called Usher Syndrome Type II. It's a gamble-each parent must have the same gene to pass it on to the child. There's a one in four chance of passing it on. One is born with varying degrees of hearing loss and loss of sight caused by a retinal disorder called retinitis pigmentosa (RP).